When a Teen Stops Treating His Type 1

It’s a parent’s worst nightmare – a 15-year-old with Type 1 diabetes who dies from lack of insulin. When first reading such a story, the natural instinct is to throw up a mental shield by looking for an obvious villain in this case. Doing so, however, might cover up an important lesson to be learned by such a tragedy.

First, let’s give this young man a name – Blake Cook, from Basingstoke, a midsized city in central England. The only photo featured in a report by the Basingstoke Gazette on Blake suggests a smiling young man with curly hair (he is not pictured in this article). The principal of his local school described him as “always smiling and making a joke of things. He was a lovely lad and everyone was so fond of him.”

Then let’s dismiss a likely culprit – a missed Type 1 diagnosis. Blake knew he had Type 1 diabetes, and his parents knew he had Type 1 diabetes. He was diagnosed at 2 years old.

While we’re at it, let’s dismiss that spectre of the terrible, terrible parent, even though that may or may not prove to have played a major role in Blake’s death. The Gazette reports that a 42-year-old woman has been taken into custody in connection with Blake’s death, but the suspect was not named. An earlier Daily Echoreport quoted his mother, Davina Cook, as saying she had no idea that Blake wasn’t keeping up with his blood sugar testing and insulin dosing at the time of his death, which occurred while he was dealing with an apparent bout of stomach flu. Even if Blake’s mother is found to be criminally negligent, it would hide an important lesson hidden in the details of this tragedy.

And that’s because Davina is quoted as saying that she made an agreement with her 15-year-old son to let him take over his diabetes care on his birthday. The report does not make clear which birthday this agreement was made, but it’s probably safe to assume it was a recent one.

Any parent of a young child newly diagnosed with Type 1 must feel like the period after diagnosis is the most dangerous time in that child’s life. I would argue that we should strongly consider the teenage years as if not the most dangerous, than at least the second-most dangerous. Research has shown that it’s an intersection of tumultuous events for those with Type 1 – a period when teens must take at least some control, if they haven’t already, of their diabetes care; when many with Type 1 are suffering from depression; when raging hormone fluctuations can affect blood sugar control; and when social pressure is at its greatest. On average, A1C scores worsen dramatically during these years.

And yet, the only thing that can be done is to give teens the chance to take over their diabetes self-care, as parents won’t be holding their hands a few years later after they move out. On paper, there is nothing wrong with handing over control of diabetes self-care to some teens at the age of 15; we don’t know if Blake was ready for it, and we may never know.

And therein lies the rub – we don’t know why Blake had stopped treating himself. His mother said he was being bullied for his Type 1 diabetes at school – that may have been it. Or he could have been dealing with untreated depression. Or the illness, and the blood sugar highs that probably came with it, could have impaired his judgement. Whatever the reason, Davina was caught unaware, and that is why Blake is dead.

It’s okay to give teens control of their diabetes self-care if they are ready. It also may be the only thing to do to keep peace in the house and avoid endless power struggles. However, parents must find a way to maintain the right to at least partly supervise the process – as a bad blood sugar swing can impair judgement and an illness can cause one’s health to deteriorate very quickly.

During arms reduction meetings with USSR officials, Ronald Reagan liked to quote a Russian saying that translates out to “trust, but verify.” As parents of teens with Type 1 cede control of diabetes care to their offspring, they must take the same attitude.

| April 21st 2014

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